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My stent is driving crazy!

4 months 5 days ago #55418 by Jack R
Kat,

When ever I have have a problem I transfer it to my doc & care team. I put them to work on a solution. Hopefully this can work in your situation too.

I made sure doc and the care team knew that the stent pain was unacceptable and needed to be resolved immediately. I needed to be seen now, otherwise I needed an immediate referral to pain management or neurology. I was seen two hours later - not my first schedule busting emergency.

My doc had three ideas - he could pull the stent and 'see what happens', but if the ureter closed it could mean placing another stent immediately. He could try relocating the stent and see if that would help. Lastly, he could place a nephrostomy tube to drain urine and provide treatment access to the renal pelvis and not need to place a stent.

He pulled the sent and life was good again, for about 8 hours. Flow of urine was blocked. A new stent was placed higher up and pain was not a problem. At least there were other options once doc considered pain as something that also needed to be considered.

I hope you and your care team can find a solution to your particular situation. Make them find a way to make your life better as you continue down this road.

I am male, ex fire/paramedic, crotchety 70's physically active rancher. I lost one kidney to a drunk driver years ago which has complicated treatment, loss of the second would mean relying on dialysis, and I'm not ready for that. Upper tract cancer presents tough choices, most reliable journal articles and organizations recommend removal of the kidney, although treatment with careful monitoring may be a possibility. To me, it is worth a careful try.

Good wishes in resolving the pain problem,

Best
Jack

What's with this Bleeding ? 6/2015
DX: HG Papillary & CIS
2 Years and 24 BCG/BCG+Inf
T0 CIS comes back.
BC clear as of 5/17 !
RCC found in my one (only) kidney 10/17
Begin Chemo; Cisplatin and Gemzar
8/18 begin Chemo , round 3

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4 months 6 days ago #55405 by Kat911
Jack,

Thanks for the reply. It really does help knowing it isn't just me. I go to MD Anderson and just love the place and people and I'm fortunate to be in driving distance. I developed stricture from the chemo so the idea is to keep it in 3 months to open things back up to allow me to have the 11 once a month maintenance doses. My local doctor wanted to remove my left kidney right away but MD Anderson doesn't think that is necessary so we shall see. I know it serves an important purpose but it gets hard at times to hold it together. This device could be used for torture if you ask me. My tumor was low grade and the trial I'm in doesn't have that many participants and I seem to be the only female. If you don't mind me asking, what age are you? I have a large family and great husband but it helps me greatly to talk to people that actually know how it feels.

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4 months 1 week ago #55403 by Jack R
Kat,

Not female, but upper tract also.

Ureter stent was intolerable. Could barely sit or lay down. NO comfortable position. Center of ALL 100% of focus.
Finally convinced doc to pull the stent, agreed to a nephrostomy tube if kidney drainage blocked.
Placement seems to have been the problem - a later stent was put in a slightly different spot without a problem - but when it was (apparently) pushing on a nerve, there was no relief.

What's with this Bleeding ? 6/2015
DX: HG Papillary & CIS
2 Years and 24 BCG/BCG+Inf
T0 CIS comes back.
BC clear as of 5/17 !
RCC found in my one (only) kidney 10/17
Begin Chemo; Cisplatin and Gemzar
8/18 begin Chemo , round 3

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4 months 1 week ago #55402 by Cynthia
Hi Kat so sorry you are having such problems. First off I have had I think three or four stents and believe it or not they were never a large problem for me. Having said that I hear I an exception to the rule and many have varying degrees. I am sure you have talked to your doctors about medication to help if you are having pain or you might ask
him about using a heating pad. Wish I could me more help but maybe someone else will jump in and be more helpful.

I can certainly understand the depression I was 48 when diagnosed. The one thing I know is that I did better once I changed my mind set. I kept reminding myself that this was a journey a temporary one and that at the end I would get my life back. It took longer than I hoped and I think I hit every pothole but finally without even realizing it had happened I did. I had bad days but by thinking of it all as something I had to do to get to the other side of wellness I made it through. I also saw a therapist so I could tell her how angry I was about the whole thing. I also think having someone to talk to about the whole thing took a lot of pressure off my husband. I had always been very active so being slowed down was hard so I worked hard finding things to keep my mind busy. My answers may not be your answers but I hope at least it helps knowing someone else has gone through the same struggles and made it out the other side.

Take care and keep us updated please.

Cynthia Kinsella
T2 g3 CIS 8/04
Clinical Trial
Chemotherapy & Radiation 10/04-12/04
Chemotherapy 3/05-5/05
BCG 9/05-1-06
RC w/umbilical Indiana pouch 5/06
Left Nephrectomy 1/09
President American Bladder Cancer Society
The following user(s) said Thank You: Kat911

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4 months 1 week ago #55400 by Kat911
I'm a female age 49 and I was diagnosed with upper tract urothelial carcinoma last December. I'm told this is a rare type of cancer for a female and the fact that I'm under 60 makes it a little more so. I'm currently enrolled in a clinical trial and developed some stricture so I'm stuck with a stent until July 23rd. I'm on week 6 and could spit nails. I hate to complain because the trial is going well and I should feel thankful but this stent is driving me insane and I can't think of anything else. I live an active lifestyle and not being able to do the things I enjoy is very depressing not to mention the constant pain and frequent UTIs. Any other females out there living with a stent? My husband deserves a medal.

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